My daughter was diagnosed at 15 months old back in 2000. I have been passionate about celiac disease and the gluten free diet ever since.
Now my brother was just diagnosed and during the 2008-2009 school year my husband and I took in a Norwegian exchange student with celiac disease.
I have just started a blog called www.thesavvyceliac.com and enjoy sharing my views and experiences with others through my blog.

By Amy Leger

Published on 12/12/2008

When people tell me their story of diagnosis, I always think it's incredible. Sometimes the mystery seems to be more difficult and have fewer "clues" than others.
As a result, the missed diagnosis or misdiagnosis takes a toll on our bodies.
These stories of diagnosis run the gambit of drama and difficulty, but they are good to share so we can empathize and learn from as a celiac community.

Celiac.com 12/12/2008 - The tales of diagnois for celiac disease are almost always
dramatic: Some people go for years dealing with aches and pains and thinking
that this is just the way their body was built. I remember feeling that way when my one-year-old was so crabby—walking
around with her big old “Buddha” belly. Recently, I requested the top three
symptoms from adult and child celiacs to put together a survey of the top
symptoms on my blog. I didn’t ask for
the diagnosis stories, but people offered some insight into the trials and
tribulations of getting diagnosed with celiac disease—and eventually leading
a new and healthier life!

It took a major virus, three doctors, x-rays, blood tests to
get to Emma’s diagnosis.One doctor told
me “kids throw up” (once every nine days? Really?), a second opinion
recommended Milicon for her “gassy” tummy. Luckily, it all ended the way it should have, with a diagnosis of celiac
disease that only took about 5 months—which is relatively little compared to
some of the stories you’re about to hear.

One woman wrote me describing her daughter’s symptoms when
she was diagnosed at age 15, but then she wrote back about the subsequent
diagnoses of her sister and mother.Jean
was diagnosed at age 70 but she and her family tell me her severe scoliosis at
age 12 was a symptom! Can you believe
being misdiagnosed for 58 years?Jean even
had to be put in a back cast for a time.

Jean’s daughter, Vicky was diagnosed with Crohn’s disease at
the age of 12—which included 3 major surgeries! Her celiac disease diagnosis didn’t come
until the age of 51. By then major damage
had been done to her body with the onsets of several health issues:rheumatoid and osteo arthritis, thyroid
disease, severe osteoporosis (both hips have been replaced ...one twice)
and severe scoliosis. It turns out: three generations of women in the same
family all started showing their symptoms in those early teen years.

Kim wrote me and said she was diagnosed
at 39 years old when she was hospitalized with stomach pain, vomiting and
diarrhea.But she added at the end of
her note, “[I] probably should
have gotten tested at [age] 11 when I had the same severe cramping that put me
in the hospital.” The bright spot in
this story is that her eventual celiac diagnosis, led to the quicker diagnosis
of her 5-year-old daughter who was just beginning her symptoms of low weight
and anemia.

Another contributor
said her 14-year-old son was diagnosed with celiac two years ago, but has also
had a kidney issue for the last 9 years.But since he has been eating gluten free…his kidneys have also gotten
better, last report was the best since before he was brought in at age 5!!
Now I wonder which really came first?”It does make you wonder.

But there are some
success stories:

One mom mentioned
her son’s quick diagnosis. “[It] started with diarrhea.
Thought it was a stomach bug.” Then it moved to constipation and two weeks
later things still weren’t right.Then
their doctor put two and two together, “[An]
amazing pediatrician said ‘This sounds like Celiac’ and ran the blood
tests. Andrew was only ‘sick’ about 1 month before diagnosis,” she
said. However looking back on it all, he
had a big belly and slow to grow.

Others talked about having celiac disease and not even feeling sick.

“I only
found out about the anemia through a blood test done as part of a complete
physical; my general health to that point was excellent, including running
marathons,” Danny wrote.

“The only reason [my 3-year-old daughter]
was diagnosed was her yearly blood draw came back positive so we had the
biopsy,” said Monica, a mom of two celiac children.

Anna’s dad, Tom, was diagnosed in his 40s after
a family-round of blood testing. He is
asymptomatic.

The last two points
show how important it is to take part in preventative measures, by getting
regular blood testing done for first-degree family members. The National Institute of Diabetes, Digestive
and Kidney Diseases says, “…because celiac disease is hereditary, family
members of a person with the disease may wish to be tested. Four to 12 percent
of an affected person’s first-degree relatives will also have the disease.”

The stories of
diagnosing celiac disease may leave many of us angry, frustrated, and possibly
grateful—all at the same time. The missed diagnoses and misdiagnoses of those who have this
disease presents a roller-coaster
ride of emotions. I hope this article
helps you in knowing many others have gone through it and are likely going
through it as we speak.We just need to
make sure we’re spreading the word and getting as much awareness out there as
possible to help others in similar situations.